My Ongoing Battle of Sleep

My life seems like an ongoing battle. While I'm awake, I battle to balance life; face the struggles, limitations, and fears of life with chronic illness; and strive to live in the present moment. While I'm asleep... well, I don't feel like that's been happening much, especially lately.

I've had sleeping difficulties for as long as I can remember. However, chronic pain adds a whole new dimension to the struggle. I seem to go through varying phases of sleeping difficulty... usually from bad to horrible. The sleep problems I have can be any combination of these:

• Mind going / racing
• Trouble getting to sleep
• Waking up through the night
• Disrupted sleep
• Stressful dreams and/or nightmares

Resulting in... NO REST!

It's been especially bad lately, and I'm not sure why. I've tried Melatonin before, and it actually made me wake up more often throughout the night.

I've tried Ambien, as well as Ambien CR. The CR usually helps me to sleep, but I've recently had additional, scary symptoms with it. Even when I took it (occasionally) in college, I might do say or do things between taking the medicine and getting to sleep, and have no recollection of it (nothing like sleep-driving... but I learned to take precautions like keeping any technology away from me, so I wouldn't unknowingly call/email and say things I didn't mean). Now, though, I get really paranoid and jumpy. I normally don't really remember what happened, or things are at least very foggy. But, it kinda scares Jeremy... and me, in the moment. I wake up anytime I think I hear something, and I even freaked out the other night at wind outside and my hair brushing up against my arm.

My doctor has tried using meds to help with my chronic migraines, as well as my sleep (trying to kill two birds with one stone); but nothing has helped. He's most recently had me trying Benedryl, which was in the hopes of helping the sleep situation and my bad seasonal allergies. But, I've stopped taking it because I was increasingly having trouble getting to sleep.

I've tried the "sleep hygiene" rules found in articles, and they're completely unhelpful. If I just lay in my dark bedroom, doing absolutely nothing (no distractions like technology or anything), I still don't drift blissfully into sleep, like the articles suggest. No! I lay there feeling tortured by my mind and body. I'm actually so thankful for my Kindle and my iPhone. I never wanted to have any kind of technology in the bedroom, but it's actually been such a life saver for me. It gives me something to do, while I wait to fall asleep (or pass out) out of exhaustion and/or boredom. Not ideal, but necessary right now.

I'm to the point of desperation now. :( I haven't been able to get to sleep until at least 3:30 or 4am (regardless of when I start trying to go to sleep), most nights. I keep having horrible dreams and nightmares that have me waking up in a panic. And, I often wake up frequently through the night. It's worsening my daily headaches and migraines, and the anxiety around bedtime and sleep is getting out of control (vicious cycle). I'm in bed so late in the morning because I'm desperately trying to get some rest... it's not that I'm lazy! I'm sooo stinkin' exhausted, yet sleep continues to elude me.

I've been trying to hold on to my faith and trust in the mercy, love, peace, and hope that our Savior offers us... so that I can live the best life possible, in the circumstances I find myself in... regardless of how miserable things are at the moment.

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." (Matthew 11:28-30)

"Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." (Isaiah 40:28-31)

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Six Sentence Story

Today's challenge is to focus on brevity by telling a story in only six sentences. While I'm not a fan of (or very good at) "micro-blogging," this was an interesting writing practice.

A Pretty Good Day

I woke up to the ever-present pain. The little bit of light that peeks through around the black-out curtains in my room strike my eyes, as though I'm staring directly into the sun. But, I try to make the most of the day, and be grateful for the many blessings that I do have. So, I spend some time writing on my blog, texting with a few of my chronic pain friends, and enjoying the quiet of being home alone. When my husband gets home, we spend time chatting with each other and cook dinner together. I'm up late because of my insomnia and pain, but I thank God for all that He's given me... especially for the day I just had with less-debilitating pain.


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

5 Challenges & 5 Victories

The top 5 challenges of my health focus:

1. Overcoming the stigma and misunderstanding that abounds about Migraine.
2. Not allowing the words and actions of others break me down.
3. Having to change and/or cancel plans.
4. Being faced with so many decisions - about self-care, treatments, etc.
5. Not being paralyzed by the fear associated with chronic illness - keeping it from taking over and preventing me from doing anything.

The top 5 small victories that keep me going:

1. Individuals that comment and/or email me and tell me that my words have said what they feel but have been unable to say.
2. Individuals that come to me to find out more about my experiences with specific treatments... it may be the first time they're being really proactive in their healthcare decisions, and I'm blessed to be a part of it.
3. Cherish moments with lower pain (don't take them for granted), no matter how few and far between they might be.
4. A stronger marriage, despite all of the obstacles and challenges of chronic illness (so grateful!).
5. An incredibly loving and supportive group of people online (from blogs, facebook groups, etc). I've made some amazing friendships that I probably would never have had without chronic illness.

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Health Tagline

Today's challenge is to give myself, my blog, my condition, or some aspect of my health a tagline. My head isn't doing well today, so I think creativity it out of the question. For now, I'm just trying to remember...

I have several more posts from my Lessons series coming, but they're not quite done yet (and I'm not going to try to force anything today because that usually backfires huge!). So, please stay tuned...


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Lessons: Learning From Life With Chronic Pain

There are many lessons that can be learned, while trying to adjust and learn to live with chronic pain / illness. It can be difficult to remember to focus on the lessons and opportunities that can be found in the difficult and dark times of illness, but it's healthy to recognize that we're still growing... perhaps just differently than we previously anticipated - there are lessons I've learned over the past 3.5 years (since my accident) that I may not have had the chance to learn, otherwise (however, I wish they didn't have to be such painful lessons... oh well, such is life). Here are some of the lessons I've learned / am learning:

Never take life for granted! We aren't promised the next moment, so we must appreciate life here and now, in the present. Hug, love, laugh, share... make sure you show your love and appreciation to those that are there for you. Do it today... do it now... because everything you have today could be gone in a moment.

Enjoy the moment. This is related to the previous one. Living in the present moment is a wonderful... though sometimes a difficult and painful... lesson to learn. I like this picture and quote - I think it sums it up pretty well.

Learn how to say "no." I don't think of myself as having been a "yes" person, but I don't like having to tell people "no." Living with chronic illness has made saying "no" more of a necessity. It's not healthy for me to always say "yes" to people... not to mention, my future is so unsure / uncertain (I can't know how I'm going to be affected by my illness at any specific time) - I answer with "yes, but..." (a side note that I may have to cancel at the last minute) or "no," because I simply don't know whether I'll physically be able to do something. I have to thoughtfully consider my own limitations. Thus, I'm learning more about myself.

Trust your gut. I've always been pretty good at listening to my intuitions and trusting my gut instincts, but I randomly struggle with it. When it's related to health, things can get a bit tricky. We place our trust in doctors, and it's intimidating to even consider contradicting or questioning our doctors. But, if you disagree and / or are uneasy with the treatment plan your doctor recommends, you should discuss it with him / her. If you know that something just isn't quite right with your body, you should keep asking questions and seeking treatment (even if you have to go to multiple doctors to try to find some answers).

I feel like living with chronic pain has taught me to listen to my body better. I'm much more aware of when something I feel is different or "off." I don't think I really paid much attention to the subtleties of my body before having chronic pain / illness.

One difficulty with this, though, is that the pain can cloud your thinking. It can be difficult to judge whether something is, for example, bad enough to justify a trip to the emergency room. I know that I have a huge struggle with making any kind of decisions, when my pain gets very bad... so, I'm still working on this.

Acknowledge and accept limitations. This has been a huge struggle for me. I've never liked limitations, and especially not the strict ones that my chronic illness creates for / imposes on me. One of the most important things here, I believe, is to remember that acknowledging and accepting limitations does NOT mean you're "giving up" or "giving in" to the disease. It's just being more aware of what you can and cannot do, and living life within those borders.

I'm not able to spend much time in the sun. I have to break up tasks into baby steps. I have to take frequent breaks. I have to take so much into consideration, when deciding whether or not to do something (where it's at, what the lighting / sound / smells / etc will be like there, who will be there, how long I'll be out, how much walking / standing / sitting is required, etc...). It's definitely an ongoing process to accept the limitations and learn to live with / around them, but I'm learning.

Learn to be flexible. I've always been a planner, and I can't do that anymore because I can't know how I'm going to feel in the future (even in the next 5 minutes). I'm learning how to plan differently, by making lists of things that I need (or want to do) - I write if there's a deadline or specific priority to it, otherwise I don't put a date on it and just tackle things as I feel able to.

My husband and I are having to learn to "wing it," by just taking things one thing at a time. That sometimes means we cancel plans at the last minute, which both of us absolutely hate - we don't like it affecting / impacting other people. We've actually brought some humor to the necessity to "wing it" (much thanks to my husband for always being able to make me smile / laugh) - it makes things a bit more bearable, but it's still frustrating (especially when it impacts others).

Be patient. One of the lessons that can be learned from living with chronic illness is patience. What a huge challenge this is for me! Being patient is reinforced by many of the challenges and limitations we face - we live each moment not knowing what the next moment will hold... when the pain is going to worsen or return. It's a learning process to be able to live in the moment and truly enjoy what is happening in the present.

Learn how to ask for and accept help / assistance from others. I'm so used to being the one to help others... it has been very difficult for me to learn how to ask for help from others... and then to be able to accept that I need help, as well as the help that others offer me. It's an ongoing process, but I've gotten better at it. I don't like feeling that I can't do so many things, especially simple things that most people never consider to be a challenge at all. But, I've found that it's usually more painful to refuse to ask for help, than it is for me to accept the help of others... if nothing else, it's easier on my physical health... it's still a struggle emotionally.

There are many other lessons I've learned and / or am learning, but these are some pretty important ones.


Lessons Series:
Lessons: Learning the Hard Way (Part 1)
Lessons: Learning the Hard Way (Part 2)
Lessons: From Suffering to Empowered
Lessons: Learning From Life With Chronic Pain
Lessons: Learning to Accept Imperfection (Part 1)
Lessons: Learning to Accept Imperfection (Part 2)


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Lessons: From Suffering to Empowered

When you're diagnosed with a disease that is incurable, it can throw your life into a tailspin. All of a sudden, your life comes to a screeching halt. You're forced to focus on making it through each moment... hour... day... and simply taking life one tiny step at a time. Everything you've hoped and dreamed for your life comes crashing down around you, and uncertainty takes over. All of the things that you used to enjoy doing, you're suddenly unable to do. And, if you have an invisible illness that comes with stigma attached to it, you can't depend on a whole lot of compassion and support... even from some people that you thought were closest to you. People tend to fear what they don't know or understand, so many people simply detach themselves from the situation... leaving the person living with chronic illness feeling increasingly isolated.

I've actually read that some people living with chronic diseases actually wished their diagnosis had been cancer, instead of whatever they have. It may sound crazy, but I can sorta see where they're coming from. Of course, they don't really wish they had cancer and are by no means belittling cancer's severity... but, it would be amazing to have the same respect, compassion, understanding, and support that's given to cancer patients.

There may be less understanding and compassion for many of those living with chronic illness, but we can't just sit around and feel sorry for ourselves. We must learn to move from a suffering patient to an empowered individual. Some of the lessons that can help move us toward empowerment, include the following.

Be your own advocate. I've had to learn to be an advocate for myself. I don't blindly take advice from anyone, including doctors. There is no cure for Migraine, period. I'm simply doing my best to work with my doctors to find some way of improving my life, despite having this illness.

Let it go. This one is difficult for me, and I'm guessing that it will continue to be difficult... but I'm really working on it. I think there are several things I need to let go of, including:

• My fears and anxieties - I must hand these over to God. Allowing myself to get wrapped up the many fears and anxieties that inevitably come from living life in chronic pain helps no one. I don't want to be frozen in fear, and let life pass me by. 
• What others say and/or do - I can't let other people's thoughtlessness upset me. Whether or not others choose to try to understand what I'm going through, to be compassionate about what I'm going through, etc... is NOT up to me. It can be hurtful, but it's out of my control. All I can do, is love myself enough to do what I need to do to be as healthy and live as good a life as possible.
• The effects of my illness - I need to let go of the times that I have to turn down an invitation or miss an event. I can't control when the pain will be that bad (or how others will respond to canceled plans)... I need to learn to be more forgiving of myself when it happens (and, again, not be affected by how others respond / react).

Celebrate tiny milestones. Since so much of life becomes taking baby steps, it's important to remember to celebrate even the smallest of milestones. While others may not think that taking a shower, for example, is an achievement, it may very well be a big one. Give yourself credit for the steps you're making toward living the best life you can with chronic illness.

Find joy in new and/or different ways or things. You may not be able to do many of the things you once enjoyed and were good at, but that doesn't mean you can't do anything. Explore new areas and interests, and you might just find a hidden talent that you may otherwise have never have discovered. It's extremely difficult to lose the things we thought we valued so much, but living a life guided by trust in God can open us up to a whole new world and to opportunities that we never even considered or thought possible.

Decide you're going to go forward. Illness and disease can be an obstacle that you sit back and give in to OR it can be a challenge that you learn to live with and succeed despite it. Let this propel you forward into the future before you. Allow yourself to see where you've been, and where you are now... but you can't focus solely on what you've lost. Until there is a cure, you have to come to terms with the fact that there is a new normal - this is the new life you have to live... choose to live it!

Lessons Series:

Lessons: Learning the Hard Way (Part 1)

Lessons: Learning the Hard Way (Part 2)

Lessons: From Suffering to Empowered

Lessons: Learning From Life With Chronic Pain

Lessons: Learning to Accept Imperfection (Part 1)

Lessons: Learning to Accept Imperfection (Part 2)

This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).